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Research

NELA Data Requests and Collaborations

Accessing NELA Data

This website includes information about accessing NELA data from multiple sites for the purposes of research or service evaluation and contains a list of frequently asked questions.

If you want information about how to access your hospital's local NELA data please contact the NELA Helpdesk on info@nela.org.uk

The NELA team are keen for the submitted data to be used to maximal patient benefit. Thus, in addition to formal output by the central Project Team (reports, dashboards etc.) we actively encourage and support external proposals for secondary research.

However, it is essential that the anonymity of the people included in the database is protected and that the data are used in an ethical way. We therefore provide two types of data from NELA:

1. Aggregate data

These are data at the level of an individual hospital. NELA already openly publishes a large amount of data collected in NELA at aggregate levels and so these data do not need to be requested. Local users may access NELA data for their own hospital through the web-tool - instructions on how to do this can be found here.

However, for aggregate data that is not already published by the central NELA team, researchers will need to fill in the "Aggregate data request form" below. This might, for example, be for aggregate data on individual patient risk factors (e.g. the proportion of patients who are anaemic before surgery).
NELA grant permission for access to this type of data. Aggregate data can normally be emailed as an excel file to an NHS or University email address. Please download the application form:

2. Anonymous patient level data

These are data at the level of individual patients but do not include any personal information, such as name, date of birth, address or NHS number. To receive patient level data, you are likely to need require a recognised safe haven that complies with certain IG standards. NELA's funder and the data controller for NELA data is the Healthcare Quality Improvement Partnership. Please first read HQIP's guidance which can be found on their website.

In order to request anonymous patient-level data you should complete a data enquiry form (Form A) and Data Access Request Form (DARF) and return to the NELA team.

The NELA team will consider your enquiry form at its next available meeting (see below) and may request further information. Once approved, the NELA team will forward your DARF on to HQIP (NELA's data controllers) for consideration by the Data Access Request Group (DARG). DARG meet once every month to consider applications. More information about this process can be found here.

If approved, HQIP will inform NELA who will make arrangements to transfer the data to your secure data safe haven. You should be aware that if your application is approved, there may be fees associated with the sharing of data. Please see FAQs (below) regarding funding.

Notes regarding mortality Data
The NELA dataset includes data on inpatient mortality. This can be provided under either of the above requests. If you require any other mortality data, you will need to make a separate data application via NHS Digital to request ONS date of death alongside a DARF. Although NELA obtains ONS data of death for its annual reports, we are legally unable to share on date of death that is directly taken or derived from ONS mortality (ie date of death, or alive/dead at 30 days).

Frequently Asked Questions

Please see the below Frequently Asked Questions for data requests

Can I use NELA data for quality improvement projects or evaluations?

Yes. Individual teams have access to the data that they have uploaded. Aggregate data is available for all teams participating in NELA and can be downloaded from our website or from data.gov.
All requests for anonymous patient level data need to go through the application and approvals process.

Do I need to inform NELA if I use aggregate data for quality improvement projects or research?

No. However, NELA must be attributed as the source of the data in publications or reports. We are also keen to hear about any quality improvement projects using NELA data and may be able to help you share and showcase your work. Please let us know how you are using the data to improve care by emailing us at info@nela.org.uk or telephoning the NELA helpdesk 020 7092 1683 / 1676

How do I attribute NELA in publications or reports?

Please attribute NELA as 'The National Emergency Laparotomy Audit (NELA), Royal College of Anaesthetists'. When describing funding please include the following statement 'NELA was commissioned by the Healthcare Quality Improvement Partnership (HQIP), funded by NHS England and Welsh Government and it is part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).' Additional information about authorship is provided here:

How do I request anonymous patient level data?

The first step is to complete a NELA patient-level data enquiry form detailing your proposal; this will be reviewed by the NELA Project team at their monthly meeting. The team will then respond to say whether the application is suitable or not, or if further information is required. In all cases, accepted proposals will then need approval by the Data Access Request Group (DARG), hosted by the Healthcare Quality Improvement Partnership (HQIP), the commissioners and data controllers of NELA. Successful applications to the DARG will then require a data sharing agreement to be signed before data can be released. In some cases, application may also need to be made to NHS Digital.

Can I request patient level data that includes patient identifiers?

No.

Can I request data that is not already in the public domain?

Yes. If you require aggregate anonymous data that is not already available freely then please fill out the form which is available in our Data Requests page. We may be able to provide bespoke extracts of aggregate data, depending on the details of the request and the data analysis capacity of the NELA team. We are unlikely to be able to provide access to data that has yet to be published in any forthcoming NELA annual report.

Can I collaborate with the NELA team on a project or proposal?

Yes, NELA has already collaborated with research teams on the EPOCH, EL Collaborative and ALPINE projects. Every approach for collaboration will be considered by the NELA team, and the decision on whether this can proceed will depend on the nature of the project and the capacity of the NELA team. If you wish to collaborate with the NELA team then please contact us to discuss. Additional information about authorship is provided here:

Is there a cost to requesting data?

Aggregate NELA data is published openly and freely, and there is no charge for downloading or using aggregate data.
Charges may apply for new aggregate data, and extracts of anonymous patient level data. The charges are to recover the costs of managing the applications process and preparing extracts of data. The costs are likely to depend on the level of service required from NELA, and will depend on whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. We will be able to advise on costs once your completed application form is received.

Will you let me know if someone else is carrying out a similar study?

Because aggregate data are open access, it is unlikely that we will know about studies using aggregate data and therefore will not be able to tell you if you are duplicating a study. Research summaries relating to applications for anonymous patient level data are published on the NELA website.You should consult this in the first instance and contact the NELA team if you have further queries.

Can I use extracts of anonymous patient level data for other studies?

No. Data can only be used in the manner described in the agreed research protocol. If you wish to carry out further studies not specified in the protocol then approval will need to be granted by the NELA team and the DARG at HQIP.

How long can I keep data?

There are no restrictions on keeping aggregate data.
However, extracts of anonymous patient level data must be securely destroyed after an agreed time - typically one year. This must be specified in application Form A and applicants should formally inform NELA once data have been securely destroyed.

What about publishing my findings?

We expect that all studies using anonymous patient level data will be written up and published in a peer-reviewed publication. This is true even for 'negative' studies as the risk of publication bias from observational studies is even greater than for interventional studies. Wherever possible publications should be Open Access and researchers should include the costs of open access publication in funding applications for studies using NELA data. All studies using patient level data must be notified to HQIP within 1 week of publication.

NELA Project Team Meeting Dates

Below you will find the submission deadlines that you will need to meet if you would like your forms to be considered at the following NELA Project Team Meeting.

SUBMISSON DEADLINE & NELA MEETING DATE

Thursday 5th October 2017 >Thursday 12th October 2017

Tuesday 7th November 2017 >Tuesday 14th November 2017

Thursday 14th December 2017 >Thursday 21st December 2017

NELA Collaborations

NELA is currently collaborating with many organisations analysing data of patients undergoing emergency laparotomy for specific projects. The aim of NELA is to provide high quality comparative data from all providers of emergency laparotomy to facilitate improvements in care for patients.

Although NELA is run by the Royal College of Anaesthetists, we also work in conjunction with the surgical Royal Colleges and specialty organisations in addition to collaborating with other projects and key stakeholders.

The document below contains NELA Collaborations and accepted data requests. For each project, we list a title, contact name, information and a lay summary. This will be updated on an ongoing basis.

We hope that this a valuable resource for you to see how NELA data is being used. If you are interested in one of the studies listed below, please contact us via info@nela.org.uk.